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Taken off 4 TKI's so far

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#1 Darlene_Jack


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Posted 26 December 2015 - 11:08 AM

I started sprycel in August 2012. Taken off it in September 2014 because of pulmonary hypertension. Started bosutinib in january2015. Taken off within 2 months because of pressure in the chest. Started gleevec around June and taken off within 3 weeks because it caused damage to my liver. Started tasignia 2 weeks ago. Taken off in 7 days because it caused pancretitus. Seeing the bone Marrow team at Stanford Medical Center on January 22nd to start search for doner. I'm hoping for a different TKI before that. Any ideas? Any new trials out. It's stressful. I went from being in remission for over a year while in Spry cell to feeling like my options are running out.
One breath at a time

Darlene jack...

#2 scuba


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Posted 26 December 2015 - 12:43 PM

I do have an idea ... but it's not mainstream and most doctors and Trey won't countenance this approach.


Role of curcumin in idiopathic pulmonary arterial hypertension treatment: a new therapeutic possibility.



Curcumin helps reduce/mediate the inflammation responsible for arterial hypertension. Coupled with low dose Sprycel, you might be able to maintain remission and avoid P.H. You would have to experiment and be monitored closely (monthly PCR's). The dose of Curcumin that is necessary is high (8 grams per day) because Curcumin is metabolized quickly by the body. 


There are no clinical trials involving the combination of Sprycel + Curcumin except in the treatment of colon cancer (http://www.ncbi.nlm....les/PMC3162943/). What this means to me is that it is generally regarded as safe (clinically tested) and "may" work for you.


I have been taking Curcumin and Sprycel (low dose 20mg) for years now - even trying to stop Sprycel altogether earlier this year to see if Curcumin alone could keep me from losing remission. It definitely slows things down (CML). I am convinced Curcumin enhances effectiveness of Sprycel enabling me to take a much lower Sprycel dose to stay at or near PCRU. The fact Curcumin is also a strong anti-inflammatory and inhibits NF-kB (contributes to arterial inflammation) could give you added benefit regarding P.H.


Note/Disclaimer: No doctor (or Trey) is likely to condone this approach as there is no clinical data suggesting this would work. The science is valid (safety and mechanism of action), but without double blind trials, no one knows if it is clinically useful. But I would try anything to avoid bone marrow transplant. 

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#3 soundoff


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Posted 26 December 2015 - 01:20 PM


This is the trial and drug I would be seeking if I was in your position.




A Phase I, Multicenter, Open-Label Study of Oral ABL001 in Patients with Chronic Myelogenous Leukemia or Philadelphia Chromosome-Positive Acute Lymphoblastic Leukemia

Principal Investigator

Michael Heinrich

Study Purpose

To test the safety of an investigational study drug at different dose levels among patients with CML or Philadelphia Chromosome-positive ALL.

Medical Condition(s)

Chronic Myelogenous Leukemia (CML); Philadelphia Chromosome-Positive Acute Lymphoblastic Leukemia (ALL)

Eligibility Criteria

18 years of age with:
- Philadelphia chromosome-positive CML in chronic or accelerated phase previously treated with two different tyrosine kinase inhibitors before study entry and are relapsed, refractory to or intolerant of TKIs as determined by investigators. Patients with CML in blast crisis are excluded from entry onto this study.
-Philadelphia chromosome-positive ALL that is relapsed or refractory to one prior TKI or who are intolerant of TKIs.

Age Range

18 - 101

Healthy Volunteers Needed


Duration of Participation

You can be in the study until any of the following happens:
• The investigator decides your cancer condition is worse or thinks you should stop taking the study drug
• You decide you want to stop receiving the treatment
• You experience side effects from the study drugs that you find unacceptable
• The Investigator thinks that keeping you in the study might be harmful to you
• You need a health treatment not allowed in this study
• You do not follow the study instructions
• You become pregnant
• Novartis decides to stop the study
• You have unexpected events that effect your health and safety

Minors Included



Clinical Trials Information Line: Phone 503-494-1080 or trials@ohsu.edu


Novartis Pharmaceutical Corporation

Recruitment End


Compensation Provided


#4 Trey


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Posted 26 December 2015 - 02:03 PM

Overall your docs are too quick to give up on each drug due to side effects.  Often there can be an initial event which can be overcome by time and drug breaks.  The PAH is probably not in that category, so I would take Sprycel off your list, but the others could still be options.  Tasigna may cause some pancreatic markers and sometimes symptoms, but those usually go away over time.  Gleevec can cause liver markers but those usually settle down over time.  Often the pancreas and liver markers are not due to actual damage to the organs, just drug induced markers.  Bosulif can act like Sprycel since both inhibit the SRC kinase, which Gleevec and Tasigna do not inhibit.  So maybe Bosulif is not the best option with the PAH, although data about that is limited.  So overall Gleevec and Tasigna should still be viewed os good options if they yield an acceptable PCR/FISH response.


I also like the idea of pursuing ABL001 as an option.  Your Onc may be more inclined to do that than re-start Tasigna or Gleevec.  But again, your Onc is being way to quick to dismiss these drugs based on what you have said. 


So you are far from being out of options.  If your Onc does not provide better care, you should find another.  Sometimes switching Oncs may be a better option than switching drugs.

#5 mlk210


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Posted 26 December 2015 - 04:24 PM

In a CML group I attend in my area every few months there's a man who got pancreatitis on Tasigna and ended up in the ER. His onc lowered the dosage of Tasigna and he's been able to tolerate it ever since with no problems. Were you on the full dose of Tasigna?

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable


#6 Darlene_Jack


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Posted 26 December 2015 - 08:43 PM

Thank you all. I was on the full dose of tasignia. Ended up being admitted in hospital after 5 days with pancretitus. I will mention this experimental drug to much Dr on 4th. I'm willing to try anything. Not wanting to do stem cell. Thank you all for suggestions will bring up to myou dr. I have 2 Dr's working together. One from Reno Nevada n the there at Stanford Medical Cancer Center
One breath at a time

Darlene jack...

#7 chriskuo


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Posted 27 December 2015 - 03:04 AM

Have you directly consulted with any doctors at Stanford or has it only been through your local doctor?

Will your January 22 visit be your first in-person visit to Stanford?

#8 jmoorhou


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Posted 31 December 2015 - 05:47 PM

Do you have Kaiser heath care in your area go to kp.org....the oncs are really good.   I had all the symptoms you did and I stayed the course with Gleevec most went away.  Like Trey said it takes a year or so but most side effects subside.  

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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